Friday 22nd October 2021

Women Of Courage Series. #61 P.M. 80/2021.

Women Of Courage Series. #61. P.M. 80/2021.

Two years ago….around this time of year, I tentatively courageously launched Women of Courage series on my blog and here was what I said then:

I got this idea from attending the Newcastle Writers Festival in April 2019 and hearing the wonderful Jane Caro speak about her book Accidental Feminists. IF you ever get a chance to listen to or read Jane’s works they are very good.

What I considered after that day and in the days to come is how we women have a tendency to underplay our achievements and whatever else we are doing in our lives. I know this is changing.

This third series of blog posts on Denyse Whelan Blogs to be found here will continue to be published each Thursday.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda

I have met P.M. who is in her 50s and know of her story of courage from some sharing with friends. I applaud her decision to come forward and share this story of hers which, out of respect for others’ privacy, will be anonymous. P.M.  will come to read your comments which I hope you will make after reading to support this woman and her family member. And will be adding her comments for which I am very grateful.

I have  added some contact details below for helplines in New South Wales and Australia.

Thank you for sharing P.M.

This image was taken by P.M.’s daughter, then aged 14.

I thought it fitting to use today and have had permission to share. The same is for the collage: drawing by P.M.’s daughter aged 12.

 What have you faced in your life where you have had to be courageous?

 

I, and my husband, have needed to be courageous for our daughter who has experienced multiple challenges over the course of her lifetime. I have, and continue to be her advocate to ensure that she has the life she deserves.

At the age of eighteen, she was finally diagnosed with Autism Spectrum Disorder (ASD), Level 2.

  • The sadly tragic thing about this was not the diagnosis but that it took so many years to get to that diagnosis.
  • If she had been diagnosed as a baby or toddler she might not have struggled with eating (due to sensory issues that were never identified). Maybe she wouldn’t have screamed every time I tried to feed her or in the middle of the night for hours on end. Initial diagnoses – silent reflux and failure to thrive.
  • I had to be courageous then with all the guilt at not being able to give my daughter the most of basic of needs – nourishment. I had to be courageous when I was perceived to be nothing more than an over anxious older mum to keep seeking support because I just knew things weren’t right.

 

If she had been diagnosed when she started school, instead of being tested for hearing loss, she might have gotten the early support she needed to be able to focus amongst all the noise.

If she had been diagnosed at seven, she might have had help with social skills so that she made and kept friends rather than being seen as attention seeking.

Current diagnosis – language processing disorder.

If she had been diagnosed at 13, she might not have experienced significant dissociative events that took her out of school, and me away from my job, and be given another diagnosis – conversion disorder.

If any of the doctors and psychiatrists who treated her then had connected the dots, saw the value in further investigation into why this had happened then maybe she wouldn’t have missed a full term of school, lost three months of her life.

  • I had to be courageous for her then – flying with her to John Hunter Hospital when we thought she was experiencing multiple epileptic seizures and not knowing what was going to happen.
  • I had to be courageous when dealing with all the doctors who sent us home saying she needed psychological help but wouldn’t actually direct us to any supports.

If she had been diagnosed at 14 or even 15, even after all that time off school, she would have been able to achieve the grades that reflected her ability and not felt dumb as well as “odd or psycho”.

  • Maybe she wouldn’t have been bullied so mercilessly that she had a meltdown in the playground surround by students screaming and laughing at her while she ripped at her face and her hair.
  • Maybe she wouldn’t have started self-harming including the first attempt at suicide. Maybe we wouldn’t have had to pull her out of school again for her own wellbeing. More diagnoses added – depression and generalized anxiety.
  • We had to be courageous when again pleading with psychologists and psychiatrists to help her, help us help her, from believing she was worthless and broken.

We had to be courageous when we decided to leave our lives behind and head north to pull her away from the toxic hell she was in and just be a kid again, even if would mean that we would need to go back eventually.

If she had been diagnosed at 16 or even 17, after moving schools, she might have had a better chance of steering clear of the drugs and other risky behavior in an effort to fit in, to find someone, anyone who would be her friend.

  • Maybe she wouldn’t have been sexually and physically assaulted by one of her “boyfriends”. Maybe she wouldn’t have left school after one term of Year 11 or lost her traineeship because of her “odd” behaviours and perceived inability to follow instructions.
  • We had to be courageous when advocating for my daughter’s right to be safe and respected in her work place.
  • To drop everything to get to her when she was having a panic attack in the middle of street, to call 000 when she overdosed because she was done. And worse, having to be courageous in the ER to insist on further treatment when they thought it best, again, to send her home only 8 hours later.

Even after the diagnosis at 18, we have had to continue to be courageous.

  • By that time she was set in a cycle of self-destruction – drugs, risky behaviour, abusers and users, and more suicide attempts.
  • There were days we feared we would lose her for good and we felt alone and helpless. The hospital system didn’t want to admit her until she was almost 19, mental health services in our town were ill-equipped to give her the intensive sustained support she needed and there were few services that could support a complex mix of autism and mental health.

At almost 21, we can finally see that there is hope.

  • Thanks to NDIS funding and some amazing supports who believe in our daughter as much as we do, she has started to see that she has a future.
  • She has found a welcoming and understanding workplace and is training to be a chef.
  • She has found her passion – to make art on a plate. She has distanced herself, most of the time, from the bad influences and is trying to make better choices.
  • As we say, life is a work in progress and there are always dips and turns on the road to the future.

Finally, I want to call out my daughter who is the most courageous of all of us.

  • She has had to live this and I am in awe of her resilience.
  • She has survived everything that life has thrown at her and kept going despite everything.
  • Her diagnosis of autism has helped her realise that she is not broken, she is not a mistake. She is exactly who she should be – a pun loving, true crime and space obsessed, artistic young lady who deserves a happy future.

Her autism is and never was the problem – it was the misdiagnoses, the lack of understanding of how autism presents in females, and over stretched medical systems that created the hell she lived through.

 

How did this change you in any way? Please outline further if this has been the case.

This whole experience has changed me forever.

This fight to save our daughter, quite literally at times, has made me outspoken about the woefully underfunded mental health system, the lack of psychiatrists particularly in regional areas and the lack of supports for autistic young adults, again particularly in regional areas.

I have discovered that I never give up, particularly on my daughter, and that I will just keep pushing when things are not going well.

I have learned the value of speaking up and speaking out.

Before all this I was quite a private person who kept everything inside but I learnt early that it is not healthy or helpful to keep things bottled up, to keep the truth from the village that surrounds you.

How can we change the stigma of mental health, of autism, if we never speak openly about what we are going through? I have developed strengths I never believed I had.

 

Is there something you learned from this that you could recommend to help others who need courage?

When struggling with challenges it is important to learn as much as you can.

It is harder to fight what you don’t understand the facts.

I learned early that often the medical profession did not have all the answers or the time to dedicate to one patient so that became my job after years of blindly trusting that they knew what they were doing.

I have also learned that it is important to speak up, to not hold things in and pretend everything is okay.

Living a lie helps no one in the end.

You also need to learn to accept help, to willingly ask for it when you need it so that you have strength to survive the long game.

It takes courage to do all those things.

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

I am definitely more capable of being courageous when life calls for it – especially when it is to be courageous for my family.

While it doesn’t necessarily change the experiences, the challenges, being courageous gives you the determination and positivity needed to not give up, and to fight for a better outcome.

We know our advocacy for our daughter, to ensure she has a bright future even after we are gone, will not stop, cannot stop but will change as she grows and blossoms.

 

Is there any message you would give to others facing a situation where courage could be needed?

No-one knows how courageous they can be until the situation arises for you to step up, step in and work through the challenges presented to you.

It won’t necessarily change the challenges you face but it allows you to keep going, to keep fighting, keep finding hope in the darkness.

Just remember, that you never have to be courageous on your own.

Having someone there who will fight with you, take the lead when your batteries are flat, to give your other perspectives makes the challenge easier and allows you to keep being courageous for as long as is needed.

I thank P.M. and her daughter for this courageous sharing of their story. I suspect, from my knowledge, that it IS indeed much harder for girls and women to be accurately diagnosed. Yes to the fact that many of us have indeed trusted the medical and helping professions and now, as we see from your sharing, there can be an inability for ‘the connecting of the dots’ as you put it in terms of diagnosis. Thank you too for the included list of places for accessing help and knowledge.

I send my best to you all.

Thank you.

Denyse.

Places for help

Autism and girls – want to know more?

https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/

 

https://www.autismawareness.com.au/could-it-be-autism/autism-and-girls/

 

https://www.yellowladybugs.com.au/

 

https://www.abc.net.au/news/2019-01-13/how-easily-girls-can-mask-the-autism-warning-signs/10701928

 

Autism and mental health – want to know more?

 

https://raisingchildren.net.au/autism/health-wellbeing/mental-health/depression-teens-with-asd

 

https://www.spectrumnews.org/features/deep-dive/the-deep-emotional-ties-between-depression-and-autism/

 

Mental health supports

 

https://www.beyondblue.org.au/

 

https://headspace.org.au/

 

https://www.lifeline.org.au/

 

https://www.health.nsw.gov.au/mentalhealth/Pages/mental-health-line.aspx

Joining with Natalie here for Weekend Coffee Share.

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Comments

  1. Thank you for the encouragement to share our story. Writing it down was tough, finding the right words to express our experiences and emotions. I am glad I did and I hope our story helps others and starts conversations.

    • Denyse Whelan says:

      I am pleased that this invitation to share your story has been a way for the complications, setbacks and eventual diagnosis to be documented.

      Like you, I too would want others to know how it has been, and how it is now.

      There is power in this post, and thank you to you and your daughter.

      “It’s for others, too” as I see it.

      Thanks PM.

      Denyse

  2. Thanks PM and Denyse for sharing this story with us. I understand the act of writing things down to get them out of your head, as it is the way I process things. I too see the ‘power’ in this post as Denyse says and hope the ensuing conversations can be a starting point for many.

    • Denyse Whelan says:

      Thank you for your insight and wisdom too, Debbie. Writing a blog post is very helpful for us as we know.

      I am glad for P.M.’s sake that she did take this opportunity and sharing more widely may bring greater awareness and understanding.

      Denyse.

  3. Thank you for sharing. It is such a revelation to realise that sometimes you have to be the expert for your child when the professionals don’t know what to do. Diagnosis for girls with autism is such a hard road and it needs to be talked about more.

    • Denyse Whelan says:

      Yes, it would seem that finding out more about a girl with a possible diagnosis of autism in a challenge beyond my knowledge.

      Working with parents in schools “we” may see behaviours that are not perhaps ones indicating any kind of assistance required or even a diagnosis, yet there can be ‘flags” can’t there?

      I too agree that parents needing to be the experts AND having health and medical professionals respect them for that is something we all need to support.

      Thanks Jacqui, I am sure P.M. will be reading these comments from others and feel supported.

      It’s been a long and hard road for the family.

      Denyse.

    • Denyse Whelan says:

      PM has responded further down J.

  4. Thank you Denyse and PM for sharing and for starting such an important conversation. PM, what a great advocate you have been for your daughter and what courage and resilience you have shown. While I was reading this, I couldn’t help but think that the old adage is true “mum always knows best”!

    • Denyse Whelan says:

      Thanks Sammie, it is true for many an instance with children.

      However, getting the professionals on board and having some kind of united decision making or even better communication between them would go a long way first.

      That would be helping instead of being not only misdiagnosed but having to continue to manage your child’s growing needs over time.

      More discussion, more awareness and more compassion would go a long way!

      Denyse.

    • Thanks, Sammie. It has been challenging for our family and I will never stop advocating for her. I know that when I retire, I want to take that advocacy further to support other families.

      I think mums do know best in many instances but much of that can be tied to never giving up – reseraching, asking questions, questioning decisions. There have been many moments along the way when I learned something else about autism that then made sense of something that happened ages ago. It is because mums and dads are there for the long haul that we need to be actively listened to by professionals who come in and out along the way. We are the ones who can make the connections for them.

  5. Thanks, Jacqui. Autism diagnosis in girls is improving, thank goodness, but because they don’t always present in the same way as boys and are better at masking their struggles, particularly at school, it definitely takes longer. I agree that we need to talk about the differences and challenges more openly in the hope that more girls and women can be supported. Importantly, earlier diagnosis could significantly reduce the onset of mental health issues. Shows like Love on the Spectrum have helped raise awareness as well.

  6. What a wonderful series!

    • Denyse Whelan says:

      Thank you, Maria, it’s been very helpful for women to share their stories and for other women to read them.

      Denyse.

  7. Denyse, this has been a great series, and so eye opening.

  8. Sadly I do have a similar story. My sister wasn’t diagnosed until 10 years after her first episode of psychosis. She had to go through so much before she was diagnosed with schizophrenia. If she had been given the right medication it would have changed life for her. Thankyou for sharing your brave story. I wish you and your daughter all the best. Regards Christina

    • Denyse Whelan says:

      Oh wow. I am so very sorry to read this about your sister Christina.

      That is such a loss to deal with when you, as a nurse and her sister, know there was a big chance medication would help her.

      Thank you for sharing so openly too.

      Denyse.

    • So sorry to hear your sister’s story, Christina. Mental health supports are stretched beyond belief and if the presentation isn’t textbook it can take forever to diagnose. The fallout from that can be catastrophic. I hope she is doing better now with the right supports. We can’t help but mourn the life that could have been with earlier diagnosis. Thankfully, like my daughter, diagnosis is better late than never and wish her and your family a more hopeful future.

  9. Oh my heart is just breaking for this poor courageous family. I studied psychology in college and even debated about being a child psychologist for quite a few years because I recognized what a lack there is for real mental health help; especially for kids. It’s not easy to advocate and speak up/ out to or against doctors especially when struggling for so many years to get the proper diagnosis. I wish PM and her daughter all the best. Hopefully they can navigate this healing road with few bumps or curves.

    • Denyse Whelan says:

      I am so pleased that by sharing these stories of courage, Joanne, we see when we are not alone too.

      Oftentimes, we struggle to let others in to the ‘not so great times’ and this blog post is an indicator that sharing and getting the story written may help others too.

      Thanks so much for your thoughts and comment about this especially.

      Your contribution to the discussion will help buoy P.M. and her daughter.

      Denyse.

    • Thank you, Joanne. You are absolutely correct re the lack of psychologists and psychiatrists that specialise in child and adolescent mental health and other disorders. It is bad enough in the cities but horrific in regional areas. It can take over a year to see a specialist, if their books are open, and in the meantime the challenges can keep escalating. Begging and screaming for support that isn’t there adds to a family’s sense of helplessness and fear for their child. We are thankful that despite everything, our daughter is finally experiencing the life so many of us take for granted.

  10. Thank you, PM, for sharing your story. You prove that a mother’s love is endless. How wonderful that your daughter is training to be a chef. I wish you and your daughter all the best in the years ahead. Thank you, Denyse, for contributing to #weekendcoffeeshare.

    • Denyse Whelan says:

      Thank you so much for your kind words to P.M. and her daughter, Natalie.

      It is a good news story now but the journey getting there, was/is, like many fraught with obstacles.

      Denyse.

    • Thank you, Natalie. It is wonderful to see her flourishing at work and TAFE after so many false starts. She has found her place in the world and can finally see that she has a future after believing for so long that she would not live past 21. Cooking and ASD don’t always work together thanks to very narrow food likes and sensory issues (for years all she would eat was rice and soy sauce, mash potato and gravy and chicken nuggets) but she is loving everything experience and we are loving tasting all the food!

  11. Despite being thankful for all the medical knowledge and technology we have today, my wife and I were still troubled at times by things that didn’t seem right, but were hard to diagnose for our kids. We were fortunate that we had very few serious things happen, but you know, our kids can’t hurt but that we’ll be there hurting with them.

    I learned a lot about hanging in there and it looks like you did too. Your path was much more worrying than ours and I applaud you and your husband for being the parents your daughter needed.

    • Thanks, Gary. I remember a comment from a paediatrician when she was very young – “You get the child you can cope with”. At the time I was both stunned and furious with that comment. No one had asked me if I was coping (and at the time I definitely wasn’t) and regardless how did that make things okay? I think back to that comment quite regularly and I guess he was right. We have coped more than we could believe was possible most of the time. If we hadn’t, I hate to think where we would be as a family now.